Mom of a teenager suffering migraines

By dawnwtwins

2 min read

I'm the mother of a 15 year old girl (Kaity) who has sadly hit the genetic lottery. My husband and I both have suffered from migraines over the years to differing extents and serverity and she seems to have them too. She's had them very occasionally over the years (at least headaches that I was pretty sure were migraines) but they ramped up big time the end of August of this year.

She has barely been to school (10th grade) for all of Sept. and Oct. and no one seems to have any answers. Her pediatrician is doing his best but he's no expert and just throws meds at her, I've had her to the ER twice (reglan was a miracle for a nine-day level 7-8 headache) and also tried the ENT - to rule out sinus issues, the opthalmologist - to rule out eye strain and Pseudotumor cerebri which 2 doc had suggested, and even the Orthdontist - to make sure the TMJ she also suffers from isn't the cause, and we finally have an appt with the Pediatric Neurologist this Wednesday - we have waited nearly 2 months for this!! We are SOOOO frustrated.

The school is losing all patience now too which is an added stress. She went to school today for the first time in 3 weeks (with an awful headache) She has dropped her first 3 classes of the day now so she doesn't have to go in till 10am which we are hoping will help give her time to get the headaches she wakes up with nearly every day under control to some extent. The headaches don't seem to run in any sort of cycle that would make anyone suspect they were related to hormonal cycles and all the basic neuro tests the docs have done have been normal enough that I have been unable to convince anyone to do an MRI or a full Lab workup.

She is taking Topamax 75mg at this point as she was losing way too much weight at 100mg. We may ease that dosage up but for now she's just trying to get used to the side effects. She is also taking Zyrtec (double dose) because they think allergies could be a trigger for her. I have also put her on Butterbur 50mg, feverfew 50mg, magnesium 150mg, and riboflavin 200mg as a result of my research. She also takes a good multi.

She spends the majority of every day in the dark in bed sleeping. Her digital footprint is even very small these days for a 15 year old girl so for all those so called experts who think solution is to take away her phone and computer I don't think that's the problem. It's got to be getting to her emotionally and face it...she a 15 year old girl - emotional is her middle name already.

I'm so happy to have found this site and looking forward to exploring this supportive community of people who understand and aren't just going to tell me she's faking or she needs to learn to suck it up.

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Nancy Harris Bonk Moderator
Hi Dawnwtwins, I am truly sorry to hear your daughter is suffering so right now. The numbers weren't in her favor; when one parent has migraine their children have a 50% chance of getting migraine but when both parents have migraine the risk goes up to 75%. AND taking away her phone and computer is not going to get rid of migraine disease. Of course she is emotional, she is in pain! We have information on teens and migraine in this section; <a href='https://migraine.com/migraines-in-children-and-teens/' target='_blank'>https://migraine.com/migraines-in-children-and-teens/</a>. You may want to look at this information to help get prepared for the doctors appointment on Wednesday; <a href='https://migraine.com/migraines-in-children-and-teens/prepare-your-child-doctor-visit/' target='_blank'>https://migraine.com/migraines-in-children-and-teens/prepare-your-child-doctor-visit/</a> and <a href='https://migraine.com/getting-help/prepare-docto-visit/' target='_blank'>https://migraine.com/getting-help/prepare-docto-visit/</a> and <a href='https://migraine.com/getting-help/six-tips-for-migraine-patients-at-your-doctor-appointment/' target='_blank'>https://migraine.com/getting-help/six-tips-for-migraine-patients-at-your-doctor-appointment/</a>. If you read any of my information, you will see I often say it's time to see a migraine specialist. And here's the thing - it's true! Migraine specialists are doctors who are board certified in headache medicine by the United Council for Neurological Subspecialties or UCNS. They treat people with migraine and headache disorders all day, every day. Let me share this information on how exactly these doctors are different; <a href='http://migraine.com/blog/how-are-migraine-specialists-different/' target='_blank'>http://migraine.com/blog/how-are-migraine-specialists-different/</a>. When you'd like to look for one here is that information; <a href='https://migraine.com/blog/looking-for-a-migraine-specialist/' target='_blank'>https://migraine.com/blog/looking-for-a-migraine-specialist/</a>. I hope this information helps, and let us know how you and your daughter make out at the doctor. Nancy
1. taylormack Member
 Hi! I'm so sorry to hear of your daughter's situation. Her situation sounds almost exactly like mine was when I was in high school. I've had migraines ever since I was born but they really started their chronic trend whenever I was a sophomore in high school and we never did figure out why. But I would wake up with headaches and they would stick with me all day and I'd go to bed with it too. It was an awful cycle that unfortunately we never really got under control until I was in college. My advice is very similar to others that have posted. While it is impossible to stay away from all triggers and believe I know the misery of having to sit next to someone wearing strong perfume and you just want to scream. But she should kind of make note whenever she gets an attack or at least for me an attack that is more severe than others because I always have a constant headache. That can help you be mindful and take preventatives if you know you are going to be in the situation of a trigger present, for me it would be going to a concert or somewhere that would be loud with high beam lights. I have a trigger list a mile long but I'm still able to control for most. Whenever I was in high school my parents and I tried all kinds of things as well. We started off with neurologists and medications. I was also on Topamax but lost too much weight and was taken off before I could really tell it was working. I've been on several since then but have unfortunately recently become very allergic to all triptans which I have been taking for years so be mindful of that. We also tried chiropractic care, acupuncture, diet changes (I was drinking lemonade everyday and my doctor said that might be my trigger... it wasn't but I still can't bring myself to drink it after I was banned from lemonade😀 ) so like everyone else has said, don't give up hope! I eventually found a migraine specialist where I live and I was put on verapamil, which is a blood pressure medication and it helped me to control them before they start. I still had migraines but they weren't as bad and I had additional medication to dumb them down when I got one. You'll just have to keep trying and see what may work and get lots of opinions because many people have many methods that work for some but not others and vice versa. In regards to the school, migraines are now on the disability list so she can get a letter from the state saying she suffers from migraines (or at least in my state I've heard you can) and she can't be treated differently because of them. High school is going to be difficult with the florescent lights, tons of loud students, strong perfumes and colognes, and lots of reading and focusing on small text but once she gets out of there she can start cutting down on triggers. I'm able to work in an office where I get natural light so I never have florescent lights on, quiet hallways and office space, flexible office hours with a boss that also suffers from migraines, and the ability to request that people not wear sprays or have candles. Things will get better!
2. Nancy Harris Bonk Moderator
 Hi taylormack, You many want to look into glasses to help with your light sensitivity. These glasses can be worn indoors to protect our eyes from light. Let me share a link with you on them; <a href='http://migraine.com/sponsored/sponsored-proven-migraine-relief-with-new-theraspecs-glasses/' target='_blank'>http://migraine.com/sponsored/sponsored-proven-migraine-relief-with-new-theraspecs-glasses/</a> and <a href='http://migraine.com/sponsored/are-you-ignoring-one-of-the-top-migraine-triggers/' target='_blank'>http://migraine.com/sponsored/are-you-ignoring-one-of-the-top-migraine-triggers/</a>. Nancy
lara Member
Sadly, this sounds very familiar. My chronic migraines started later in life but it sounds as though your daughter got them early. My key triggers are hormones and weather. You might see if weather patterns have anything to do with her migraines. (yes, it sounds crazy). She needs to see a specialist. I had an internist when I forced onto an HMO and they put me through hell for a year before I was finally able to switch policies. The Topamax is not a bad choice, I'm on 400mg a day, and the weight loss will plateau. In the meantime, you can have her eat to maintain (providing she can eat and is not constantly nauseous). You can also discuss the other supplements you're giving her with the specialist and the specialist might have some additional advice that just hasn't occurred to the pediatrician. I walked out of my neurologist's office with a book of advice on my first appointment. As for the school? Do they have disability services? Because the school has no cause to be frustrated or anything else. This is as much a disability as any other illness or injury. She needs accommodations provided by the school and they need to not place any additional stress on her as it makes her condition worse. You'll probably have to jump through some paperwork but it will be worth it. Be prepared to do the same once she goes to college too. My neurologist did it for me. One thing you might discuss with the doctor, my topamax dose is high (400mg). One of the ways I deal with the dose is to split it at night rather than take it morning/night. I take 200mg at 7:30pm and a second dose at 2:00am. Yes. I know, it requires waking up but a majority of the cognitive side effects have worn off by the time I get up. My neurologist approved of this method and said he was going to recommend it to other patients who have difficult with the cognitive side effects. You might ask if she can try splitting the dose too. {just don't crush the tablets 😀}
1. dawnwtwins Member
 Weather is a huge trigger for her headaches (as well as mine and my hubby's) we can all predict a storm more accurately than the old man with the bum knee 😀 The fuzziness of the topomax has worn off mostly so I don't think I need to worry about taking it just at night but that's a great idea. We are working on putting the accomodations in place with school now - it's a lot of work but will be worth it when it's done
2. lil Member
 AH...the weather! Our daughter's migraines peak with the barometric pressure. ugh. If there is a storm brewing, we too know it before the weather channel! We all accept that she will be in her room and in pain for a day or so until the storm is waning or she adjusts. We have a barometric calculator on the wall...it helps explain the pain for her.
dawnwtwins Member
Thanks for the support ladies - Nancy, your advice made me so much more prepared today. In a nutshell, this appointment we waited 6 weeks for was a colossal waste of time. The Dr. was very nice if not a wee bit condesending (but I'll chalk that up to him being in pediatrics). He did fewer neuro tests than her pediatrician or the ER dr did, looked in her eyes for 3 seconds and then just asked questions about how many days she's been out of school. Nothing about the headaches or her triggers or anything like that. He decided she has chronic headaches but they must not be migraines because she has them too often. He wrote me a letter for a 504 plan for school to be put in place (but my daughter does not want a tutor as he insists (she is in honors classes - she can read the directions herself - in our experience a tutor provided by the school is more of a glorified hand holder making sure she fills out her stupid worksheets.) The extent of her treatment plan was as follows: 1. Excercise for 30 minutes twice a day 2. Stop taking all meds - OTC pain meds and Topomax (which he said she should quit cold turkey) 3. Go to sleep and wake up at the same time every day 4 never take naps even when she feels terrible 5. socialize with her friends whenever possible. 6. Go to school for as many hours a day as she can handle He never once asked her about her headaches: when they happen, where they hurt, what makes them better/worse, how bad they get, what they feel like coming on, other symptoms with them etc. The worst thing is that she thinks that the Topamax is actually finally helping and we are going to increase her back up to 100mg a day and see how she does now that she's used to it - don't really care what this stupid Dr. thinks - The pediatrician will keep us supplied. We are learning some of her triggers. We know that the barometer is one of her triggers (as it is for me), also allergy attacks with massive sneezing can set them off, but the fact that she wakes with them and isn't an Aura girl makes it hard to head them off because she doesn't get warning. We haven't found a good drug to make them go away when they hit - Sumatriptans gave her scary side effects and she has asthma so that limits some of the others. I'm making an appt with an actual headache specialist though - we have one a couple of towns over so I'm getting a referral for that. This is crap, I won't take her back to this guy.
1. Nancy Harris Bonk Moderator
 Ugh! I'm so sorry that appointment wasn't successful. Contrary to that doctor's suggestion (we really don't like to disagree with them) Topamax should NOT be stopped suddenly. As a matter of fact it needs to be tapered down slowly. Let me share this information with you on Topamax dosing; <a href='https://migraine.com/migraine-treatment/topamax/dosage/' target='_blank'>https://migraine.com/migraine-treatment/topamax/dosage/</a>. If your daughter is taking OTC medications on a daily basis, it could be creating another problem called medication overuse headache or moh. This can occur if we take migraine abortive medications and/or certain pain relievers, whether they are over-the-counter or prescription, more than two to three days a week. If we are taking these types of medications our migraines will be more difficult to treat and we may end up in a daily cycle of pain that is hard to break. Let me share a link with you on this topic; <a href='https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/' target='_blank'>https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/</a>. May I suggest your daughter start keeping a migraine journal to track her attacks. This is also usual to identify migraine triggers and patterns. There are so many apps out there today, it really is quite easy to do. <a href='http://Migraine.com' target='_blank'>Migraine.com</a> has the Migraine Meter you can look at, but if that doesn't fit your needs there are many more available; <a href='http://migraine.com/migraine-meter/' target='_blank'>http://migraine.com/migraine-meter/</a>. Keep me posted, my fingers are crossed for some relief. Nancy
tinagascon Member
I understand your daughters pain. I began having migraines around age 11. Don't give up on doctors totally. Dump the ones that don't seem to try or make you feel like you're over reacting. Keep going until you find one that you like. Also do your research on the meds OTC and RX, knowing drug interactions and what has to be stepped down. With OTCs watch out for rebound headaches from over use. I once spent a week "detoxing" from rebounds (not by choice-I was just to sick to even think about swallowing anything). Hang in there ladies. Theres a lot of info and support here.
1. dawnwtwins Member
 Thanks - I'll go through a ton of Doctors if I have to. We have to find answers. Not stopping till we get there - thanks for the support
pooh2you Member
My 16 yr old daughter (JuliAnna) was pretty much in the same situation. Although, it is just my side of the family that has given her the "fun". She at first saw a pediatric neuro, but after a few very frustrating visits, she started seeing my neuro. He was wonderful with her! She can't take any triptans. They do not work and some make her very nauseous to the point where she vomits. My/our neuro put her on Midrin and Fioricet as abortive meds. They are working well for her so far. (She is also on Topamax 75mg p/day) Juli also had issues with school, when she was able to attend she usually had to come home by mid-morning because of all the perfume/body sprays kids use in school. She missed an entire trimester in both 9th and 10th grades as well as many absences the other 2 trimesters. She is now enrolled in an on-line school (Connections Academy) that is a public charter school in our state so there is no cost - it's covered under state funding. She just started in September and loves it! She is able to "go to school" on her own schedule - 24/7. We live in Michigan so she is required to have an average of 30.5 hr per week in school. The school has Honors and AP courses and clubs for the kids. Connections has "schools" in most every state. I truly feel this has been a lifesaver for my daughter. It would perfect if by some chance you lived in Michigan - then our girls could talk and support each other! Hang in there!
1. mortman Member
 My 16 yr old son began Migraines at about 6. We have traveled the meds of every class route. I'm not saying we have done every conceivable combination, either for the right amount of time or in the correct dosage, but my son so far has had zero success preventatively or abortively. 18 months ago, he stopped taking the meds as the side effects began to transform him into a visibly dazed and confused young man. Since then, other than brief respites from the migraine assaults, they have continued at the same pace as before the med halt. His brand of migraine, usually attacks him in the morning within an hour of waking. School is problematic. That said, his IEP is enabling the basic accomodations he needs but doesn't go far enough. I'm not certain what is the best way to educate a migraineur, but I do know, having attendance based testing metrics is NOT the way. We are constantly assessing the situation to update the options available. But, that is a topic for another day. Feeling isolated and impotent against the Migraine assault, I have reached out to find other people in the same predicament. Other than online forums, I have not located a meeting of sufferers, family or friends to share my experiences with. Accordingly, I finally bit the bullet and started a physical meeting called Look AHeads. We're just getting started, but we meet in Birmingham, MI per the <a href='http://Meetup.com' target='_blank' rel='noopener noreferrer ugc'>Meetup.com</a> link below. Here is the link... <a href='http://www.meetup.com/Look-Ahead-Migraine-and-Headache-Group/events/151085242/' target='_blank' rel='noopener noreferrer ugc'>http://www.meetup.com/Look-Ahead-Migraine-and-Headache-Group/events/151085242/</a> I hope all the contributors to this forum realize the great service you're providing by sharing your experiences. Thanks.
julia-rose Member
Hi there, Your daughters situation sounds very familiar. I'm about to turn 22 years old and I found out I had been suffering from migraines when I was a Junior in high school. I noticed I wasn't feeling right when I started high school (at 15 years old). I was getting extremely bad stomach pains and always felt sick. Everyone thought it was just the stress of going from such a small school to a huge high school. I missed so much school that year that my parents decided to start taking me to the doctor and tons of specialists. No doctor could figure out what was wrong with me and I was told I had "non-ulcer dyspepsia". Pretty much a fancy way of saying there's something wrong with my stomach but they can't figure it out. I left that high school and started at another one the next year. I kept having really bad stomach pains and it wasn't until my junior year that my head started to hurt and I realized I wasn't just having a little headache, my head was hurting way too much. So I went to my first neurologist and was diagnosed with abdominal migraines. My first neurologist wasn't very helpful. His advice was to drink a ton of coffee, get enough sleep/go to bed and wake up within an hour of the night/day before, be active, and eat healthy. None of that helped me, and being active actually made my migraines worse. He had given me zomeg to take but I hated the side affects so I stopped using it. I then found a different neurologist and he told me there's not really much I can do except I should try proprananol (I'm sure I'm not spelling that right) and he gave me maxalt for when I get migraines. I got rebound migraines from the preventative proprananol, but maxalt seems to help me a lot when I actually have a migraine. The only things I don't like about it are that it sometimes gives me really bad side effects (being tired, my sinus' hurt, and I don't feel like I'm living in real time) and that if I take it when my migraine isn't excruciating it doesn't get rid of it. Going back to the subject of school, both high schools I attended didn't seem to understand how disabling migraines are so they got fed up with me missing so much school, pretty fast. (I was missing about half a year if not more, each year) I dropped out of high school in September of my Senior year, waited a year, and then found out about Insight Online, which I enrolled in and LOVED! It was awesome being able to actually interact with people my age, and having real teachers who loved what they were doing. We'd have class meetings once a week where we were able to talk about what we were learning as well as share pictures, talk through a microphone to each other, share facebook accounts, etc. At the end of the year we had a graduation so we could finally meet each other in person if we hadn't done so already, and we had a prom after that. I met a lot of people who suffer from migraines and it was nice being able to relate to people my age. So maybe your daughter would like to look into that. I know how hard it is to keep friends when you're never in school, and barely able to go out and do things. I really hope she finds something that works for her to help her control her migraines. I wish I could be of more help, I know how difficult it is to go through this both being in your daughters shoes, and seeing what my mom went through trying to help me feel better. (Sorry for the totally jumbled reply.)
1. pooh2you Member
 It's nice to hear that someone else with migraines has benefited from online school!! My daughter's online school has the same type of setup!
2. dawnwtwins Member
 I wish she was willing to try online school. I can't even convince her to do a tutor. She's convinced she can handle this herself. She also loves the fun stuff of school and her friends so she doesn't want to cut herself off from it altogether.
kboothadams Member
Hi, just read your daughter's story and my heart goes out to Kaity. When I was her age, I had terrible migraines, too. No family history, days at a time in a dark room, and I sympathize with her situation. No doubt, that pain is real. And thank goodness there are parents out there that believe it when others don't understand. I am now in my 40's, and over time, my headaches have become much less frequent. During the last 30 years, I've tried just about every kind of OTC and prescription medication - both pills and injections. Some wouldn't work at all (not OTC medication ever did), and some prescriptions would work for a while but make me feel really sick, and the headache would come back every day for days. 6 years ago, during a trip to the ER for a migraine, I had a doctor who prescribed Relpax. It was life-changing. I have talked with several docs since then who did not know about it. So you may want to ask your doctor and do your own research. It made a huge difference for me. I hope you and Kaity find something that works for her. My heart goes out to her - God bless you 😀
1. dawnwtwins Member
 We are making an appt now (waiting for all the files and referals to make their way to her) with a real headache center/expert and I'll be sure to mention that medication. Thanks.
2. newdancerco Member
 Others to put on your "hit list" that not every doctor knows about but really help some people: Frova Remerge Both are triptans, so not together, but worth knowing the names in case your "specialist" doesn't. Mine didn't mention either- a coworker swears by Frova, and a Primary Care doc found Remerge!
joypeters Member
I am so sorry to hear this. My daughter inherited them too. T WORSONES THAT SHE AND I both suffered from were in that same age period. I remember coming home from school curling up in bed with several pillows on my head triple doses of aspirin and waiting to die. Of course that did not happen. My daughter did the same thing. As she got older they got better. Birth control pills actually helped her. The hormonal changes are not as severe and they are helping her headaches. We both have them at least once a week. You all have our sympathies.
1. dawnwtwins Member
 The doctors don't seem to think her problem is hormal related because there isn't a schedule to the headaches or correlation to her cycle. I might almost be willing to try them for her if I thought it would help but hate to subject her to potential side effects of BC at 15 if they don't think that's the issue. Thanks for support
bethardthelovely Member
I read your story and can totally relate to your daughter. As a nineteen year old who has suffered from migraines her whole life and is trying to finish college, all I can say is hang in there! I totally understand what she's going through. It's so good to hear that she has a mum who cares and understands as well, I really think that makes all the difference. Good luck to you both!
1. dawnwtwins Member
 Thanks - as the mom, I know I'm not the one suffering but I do get frustrated on some days when I wish she would make a little more effort. It helps so much to know that people are here for us though.
newdancerco Member
Aoumds so familiar. My father told me at one point that if I didn't stop taking handfuls of Advil at a time, I would end up addicted to heroin before I graduated high school (doesn't make sense to me, either). My stomach always hurt as a child, and no one believed me after a while. Once I hot puberty, it shifted to my head, and again, no one believed me. How could it ALWAYS hirt THAT BAD, after all? In college, I finally had an aura and was diagnosed with migraine, tjen had an arm go numb and ended up at the neurologist that xhanged my life. She told me I have chronic daily migraine, my head really DOES hurt like I think it does, and I probably had abdominal migraines as a child! I'm not nuts, yay! Little did I know what little difference that would make- I have a diagnosis, but people (including Dad) remain incredulous. Keep believing her, it is better than any medicine!
1. ellen Member
 Newdancerco I am a little concerned at the amount of meds you have said you've been taking. Of course you were just treating your pain, not looking to get high with your Advil dosing, lol. However, there is a really awful headache type called Medication Overuse Headache (MOH) that I'm wondering if you have heard about? It might be super important to mention it to your doctor, as proper diagnosis and treatment almost always results in life changing positive changes in pain, which I am hoping for you no matter your diagnosis. Here is a link that might help you learn something about MOH: <a href='http://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/' target='_blank'>http://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/</a> ~Ellen
natalieb Member
Hi Dawnwtwins, my daughter (Stella) is 16yrs old - in Gr10, also on Topamax 100mg...thankfully no big weight loss...loads of tissue salts and homeopathy. We live in Cape Town, and it feels like the dark ages here!The neurosurgeon thankfully suggested trail running before upping the dose to 125mg, but its tricky to go running when you have a migraine. This week due to exam stress she has had 4 major episodes. Fortunately the school has been generous in allowing her extra time...but sadly this doesnt make up for all the time she cannot learn due to the dark bedroom story... I absolutely resonate with the digital footprint story, and all other ENT specialist, eye etc....never ending. We have recently started TRE and hopefully a mindfulness (MBSR) programme in January. Have you guys tried any of those interventions? I really really understand what you're going through. Stella has had this since she was 9 yrs old and they wouldn't diagnose until she was 13yrs when at last she could take maxalt for the pain. Until then I was a home-pharmacist with ibuprofen and paracetamol and valoid! Strength to you and Kaity. As I type Stella is doing the dark room thing. Thank goodness we have managed to stop the vomiting. Thinking about Beta- blockers...have you tried them? Compassion and empathy, Natalie
caringmom Member
Hi, Dawnwtwins, My son is suffering from a similar experience. He missed most of 9th grade due to migraines. I am glad you are getting accommodations from the school. If she continues to struggle with migraines, you should ask to have her referred to the child study team. If she can get classified as Other Health Impaired, she will have better protection from teachers who are not understanding (although many are...you are bound to run into some who are not). My son was able to get a lot of relief from a specialized chiropractor, called an ao chiro. Hopefully you can find a good one in your area..they are few and far between. You may want to also try a nutritionist..not sure if anyone suggested that yet. And a cranial sacral therapist may be able to provide some relief, too. The doctor appts are exhausting I know. I hope you find some relief for her. It is terrible for her to be suffering so much. Do not give up!! You will find something to hopefully make her migraines at least manageable.
1. mortman Member
 I am responding to you because you have a son with Migraine. My 16 yr old son has been having Migraine since age 6. They have escalated in the last 3 yrs to every 2-3 days. We have been the usual routes with Neuros, psychs, chiros etc. scrip Meds and natural remedies, massage and acupuncture. It has been frustrating to say the least. In all those travels, I tried to find a group of sufferers, family and friends to share with, ask question of, give solace to.. Hard as I tried, I was unsuccessful. So, I bit the bullet, and recently started a group on my own. We are located in the Detroit Metro region. Its called the Look AHeads Migraine and Headache Group. See the link below from <a href='http://Meetup.com' target='_blank' rel='noopener noreferrer ugc'>Meetup.com</a> <a href='http://www.meetup.com/Look-Ahead-Migraine-and-Headache-Group/events/151085242/' target='_blank' rel='noopener noreferrer ugc'>http://www.meetup.com/Look-Ahead-Migraine-and-Headache-Group/events/151085242/</a> Sharing with others like what happens in this forum brings hope to so many people that feel isolated. The very nature of this condition is isolation. So, by my reasoning, reaching out is a way to combat the isolation. I hope your son has success in his migraine management. Good luck to you and your family.
lindsayloo Member
Wow. I'm a teen with migraines, and I was in nearly the exact same situation last year. I missed months of school and eventually had to get a home tutor because it was all too much. Before that, however, I also only went in for some classes. My parents also got a special plan with my school, allowing me to have extensions on work, go to the nurse, have food when i needed it, etc. I had similar medication as well, which was changed often. Luckily, it was towards the end of the school year and eventually got better over the summer. My school got impatient too, and my classmates seemed to look down on me, saying "I go to school when I have headaches." Others said I was lucky to miss school, which made me want to scream. I was anything but lucky. Emotionally it was terrible. I cried. A lot. Helpless is the only word to describe it. I felt guilty, too; It was hard for my family. The only advice I have is to be there for her. So many people thought I was just making it up or exaggerating. Even thinking about it makes me want to cry. I can't imagine anyone faking that kind of pain. I had taken Topamax, Pamelor, and Imitrex. I also had chiropractic and biofeedback treatment. These seemed to help a lot, and gradually my headaches lessened. I think just lessening the stress I had and letting me know it was okay and not my fault helped the most. Without the stress and anxiety I had, I was much less sensitive to my triggers (which were chocolate, noise, light, heat, etc.) That is another extremely important thing: we assessed my triggers, and kept a log of what was happening. Now I am much better, and only get headaches on occasion. I am still taking Pamelor, but am weaning off of it within the next few weeks. (I was getting night terrors, which may have been caused by it. Fatigue was also an effect. Topamax also had side effects: weight loss, as you mentioned.) The only medication I take when I get a headache is Advil. I hope you can find the cause of her headaches and treat them. Just don't give up. Good luck.
twaasa Member
Thanks for sharing your story Dawn... My daughter suffers from Chronic Daily Migraine - since the 8th grade. The best analogy I can use to describe the journey is the never ending onion... for every layer you peel back you come upon another unforseen layer, never quite getting to the core - which, of course, would be "the cure." So, being that there currently is no cure... all we can do is manage the disease as best we can. This can be quite a daunting task as there are as many opinions as there are people. Baihley, my daughter, is now in the 11th grade. Her school has been extremely helpful but by missing more than half of the school days - her options are becoming limited. We have had her on a 504 plan since she entered Highschool, which has helped but from the schools perspective... she's not meeting their criteria. So what now? Online, adult education, GED... or is there a bigger picture I'm not seeing? I'm her father, I live almost two hours away and can't describe the helplessness I succumb to at times... I see her weekly and do the best I can to support her by just being there and living life. I feel by being in a positive, energy giving state... I can help her and myself. I'm so thankful that the Baihley's and Kaity's of this world have moms that are willing to move heaven and earth to help their daughters! From my perspective, we can get a little lost in the whole school thing when their lives are hanging in the balance but that's the world we live in - so what's the balance? We have not found a cure for Baihley much less a manageable protocol that will give her quality of life most days. So we keep trying and keep living... trying our best to be there for her in a way that is life giving and normal... on her good days.
marybethcramer Member
My daughter Maggie has been suffering from Chronic Daily Headaches and Migraine for 3 years now. She is now 14 and in 9th grade. We have a neurologist we trust, we have a counselor and a psychiatrist. Because the thing that happens with chronic pain is you become depressed, your anxiety takes over and it just makes it all even worse that it already was. Maggie rarely gets a pain free hour, I can't say she has had a whole pain free day. She's been hospitalized 3 times. She has tried Gabapentin, Topamax, Atenolol, amitriptyline, Depakote. Some worded for a while and then stopped, some never really worked. None of them ever took it all away, they just brought the pain level down to one she could manage. We have had blood tests, MRIs, ophthalmological tests, braces with a herpst appliance to adjust her jaw. When the braces come off next month she will be getting a custom night guard to prevent teeth grinding. She took yoga to try to help her relax and reduce stress. This fall has been her worst and yet her best. Pain has been horrible, side effects gave her physical issues. Yet she is learning to take control,she will always be learning. Every day we talk about her doing her best, whatever her best is that day, just strive to do your best. Because this thing will be there, we have tried so much, it will be there and it will just have to be managed. So every day she makes a choice, can she muster the strength to get through school or not, can she go to band or not. She wants to be a "normal" kid and the marching band director has been incredibly supportive of her and what she can and can't do. Her friends, what would I do without her friends. She has found some really great kids and they know how to lift her spirits, when to prod her into more activity or just let her be in a quiet zone. This thing sucks, and I cry for her more than she knows. And she gets tired of my asking her what her numbers are today and did anything specific happen that seemed to make the pain worse. Somehow she will make it through this, somehow she will have a good life, somehow we will keep fighting to find her some relief. The one thing I have found that helps her to not be consumed by the pain is laughter. And to see her laugh is the most amazing thing because I know behind that smile is a very thin invisible wall holding back the pain and it could give at any second.
not found
I'm in my 50's now, but my migraines started when I was 9 or so, and beforre that with the stomach pain. Mine diagnosed fairly easy since my grandfather was well known for his. I was on every preventative they tried at the time and I actually appreciated Caffergot and Inderol. The triptans are extreme bad news if you have depression in the mix. Both my son and daughter have inherited migraines. My son has actually had them since he was 3 or 4, but all of his doctors prefered to have us work with acute solutions as we could until the kids body chemistry's became more adult. So they have been being treated with cold compresses on forehead, warm on neck and Naproxen Sodium or Aspirin, or they used to take Ketoprophen when it was OTC. Their schools hated their absence record, my school hated mine...but I think back in the day there was actually more compassion on the part of the school, at least it seemed that way to me.
marleneevanko Member
My son has had migraines starting in the 6th grade. It would baffle me because he would be fine the night before, and then wake up 5 or 6 am with a whopper headache, sometimes throwing up. They were infrequent then(1/year), until he got into HS. Summers are always migraine free, but during the school year is a different story. He is now a senior and has had 3 migraines already and a stomach migraine, lasting 3-4 days. We have found some success in the medications he uses and realizing the triggers, (neck tightness/misalignment, too much computer usage, stress, new sport). After missing so many days of school in the HS, I finally took him to a Children's Hospital pediatric neurologist. That was a waste of time and money. Probably because he was only 15 at the time, the doctor wasn't keen on prescribing different meds. Triptans (Maxalt, Imitrex, Relpax, Sumatriptan)did not work for him, although they gave him some relief while he could take them for the 2 days allowed. After 2 days of the meds, he couldn't take anything else besides OTC meds, (ibuprofen, alleve, or Excedrin migraine). We needed to do something so I took him to an adult neurologist, who said there are many different migraine meds out there. We just have to try and see which ones work. We were not interested in a daily med. His PA gave us samples to try. The one that worked for my son is called CAMBIA. It's a minty powder that you disolve in 2-4 tbsps of water. The first migraine he had using this was gone in a day, when before they usually lasted a week. You can take it in 2 hours again if needed. Then you can use it the next day, again 2 doses. After that, they suggested using something else, another prescription. They did not say he couldn't take anything else besides OTC meds, like the pediatric neurologist. They were intent on finding a med that worked and were confident there was one. When your child is in pain, you want to try everything possible to find a solution. They were willing to work with us. The migraines he has had these past few months lasted more than a day, about 3. But Cambia does so much better than Maxalt, Imitex, Relax, or Sumatriptan. Now we're realizing he has been having stomach migraines all along (middle school thru HS) instead of a stomach virus or flu. We are starting to put together the triggers for them; exercise (he just started serious winter baseball conditioning), chinese food, and stress of course. However, now we have to find out what works for them. He has no headaches with these, just nausea, dizziness, and throwing up. Hope this helps someone out there. Glad I found this site. Very helpful.
lil Member
Hello- I am reading all of these fabulous responses. Our daughter also suffers from this "invisible" condition. Though it's not invisible to me. I can tell when she is suffering by looking at her eyes. The pain is there for sure. She does have "emergency" medicine of FROVA but must take it with Prednisone to prevent "rebound" migraines. I never understood that and how the Prednisone helps prevent that and that combination does help her break through. Sometimes, we have to take this back to back ...2 weeks in a row to break through. She is 17 and missed so much school last year. This year she is going to school regularly, but still always has a base migraine. I think she is just more mature and learning to live with chronic pain. I do worry about depression. Has anyone had a teenager with chronic pain from migraines that become depressed? Our daughter has not and I pray she does not. This is a great website and I am so thankful for this after dealing with this for 8 years.
marybellian Member
I also live with migraines and had them since I was a teenager. The majority of my migraines revolve around a problem with my hormones and when I was on birth control pills I didn't get them. As soon as I became to old for regular birth control pills my OB/GYN put me on progesterone only ones and the migraine headaches are back. I never got them when I was pregnant either. The new birth control pills are safer than the old formulas and they actually say being on them for 5 years lowers your cancer risk. As my hormones deplete the migraines are back with a vengeance and it is horrible again so I am trying some of the natural remedies. Another problem that sets off the migraines is allergies so if the weather where you live has a lot of pollen or molds that can also be a cause. I take an herbal immune boosting supplement Quercetin PHQ with Bromelain (pineapple extract) When I first moved to Arizona I didn't have any problems with the migraines and my sons were ear infection free for the years we lived there. I developed new allergies and ended up on steroids in the form of an inhaler it also helped prevent the migraines temporarily. After moving to Texas my migraines are worst and the wet weather seems to be part of the problem along with the pollen. I also have the TMJ but I don't grind my teeth at night and couldn't tolerate the mouth piece. My dentist leveled my teeth by correcting my bite and every time I get dental work they have to correct it again. I know you said it wasn't the issue but these headaches were non-stop and i couldn't even walk around the room. I resorted to acupuncture for when I get a migraine lasting more than a few days. I also have seen massage therapists and chiropractors but the acupuncture is by far my favorite therapy. My acupuncturist only charges $50 a session better prices than traditional medicine. They say any headache that lasts more than a few days has to have a cause. I found out what my headache triggers are and it has been easier to find remedies for them.
dawnwtwins Member
Sitting in the hospital ER with her today. The Reglan, Benadryl IV cocktail just got started and we passed the 5 minute panic attack that goes with. Two and a half days of this one was enough for us to cry uncle. Dizzy, nauseous, missing more school and the worst in her eyes missing an audition today for the school musical. She's so determined to manage to do this. I'm just praying the real headache specialist she's seeing jan 3rd can help.
migraineproblems Member
I'm 23 and have gotten migraines since I was 10--with classic aura, pain, throwing up. They didn't hit their worst stride until I was about your daughter's age, 15, in high school, and I totally empathize with the missing out on events/daily goings on. Luckily, mine were infrequent enough (1/week-ish) that missing large amounts of school wasn't an issue, but I missed many sports games, exams, outings, etc. I tried Relpax and Imitrex back then and got no relief, so would just suffer through in the nurse's office, waiting to be picked up. I'll echo other peoples' comments--try everything. Literally, everything you are possibly able to try/afford. Recently, my migraines have changed (I still get classic auras, but now get those fun multi-day migraines in addition to "short" 8-10 hour ones), and Imitrex works well enough now, for some reason. Reglan combined with 3-4 Advil kicked a 9-day migraine for me, too. I tried Fiorocet, which worked in that it made me sleep and forget the pain, but I gradually got used to it and it became ineffective. I also tried acupuncture and Chinese herbal teas in high school. The worst thing someone can do is belittle the suffering that comes with migraines or think that you're being overdramatic, and it sounds like you're doing a great job supporting her daughter. One of my best friends got migraines too, so we could talk to each other about our situations. Try to find other people her age that she can relate to, and I think that'll help her not feel as alone. I remember being 16, curled in a ball with the worst pain of my life, feeling like I was singled out, cursed. There's no cure for migraines, but at the very least, there's are ways to manage & control them (even if it takes a long time to discover those ways).
jcoop Member
Im currently 16, ill be 17 next month and I, like your daughter suffer from migraines that cause me to not be in school. Im currently homebound- meaning my neurologist had to fill out a form so i would be able to stay home and do my school work from home and my teachers would come to my house to visit me. originally this was supposed to be PRN or as needed but like your daughter ive recently hit a point where i have my migraines EVERY single day and have a battle with myself. Unfortunately this is not some message offering insight that i found some "miracle" medicine that helped. I am just offering support that i know how it feels. Since i have not been to school since September i have constant people thinking i moved, not many people checking up with me, and teachers giving me a hard time because they believe im either faking it or they dont understand how severe a migraine truly can be. I dont have much support from anyone- the onlyones id do are my mom, who also suffers migraines, my dad, who just recently started getting migraines but he has his moments when he tries to push me too much, and my aunt and cousins. I dont really talk to any of my friends to know if they support me or believe me for that matter. the only one i do know that believes me and supports me has been my best friend since i was in diapers and when i started getting migraines(I was 6). Now i have tried just aabout everything, even my neurologist doesnt know what to do, I have gone to the therapist, kept a migraine diary, done biofeedback and a lot of different prescriptions too. Next on our list is acupuncture, anxiety meds and figuring out how to cure my insomnia because i do not sleep at all except a couple of naps during the day, i cant even stay up for 24 hours either to try to help. But because i know how it feels to have minimal support and feel like im unluckyor the only one in the world like this or crazy or something unnormal, i wanted to share my story with you and your daughter so she doesnt feel the way i do. Good luck
momee Member
My daughter started migraines at 18 months(cyclic vomiting/adominal migraines) which she still has today at 21. Schools and migraines are scary, because they will turn you into social service( a very big battle, but if it happens, get a lawyer) but they also have much better opportunity with home schooling; even linked to the public schools and provide computers.( They recommended my daughter quit school, she was 😎 I can't tell you all the rx my daughter has been on, surgery, oxygen, the list goes on and on. My daughter has headaches all the days there is no severe migraines and then the migraines which have last for a month or more. She rarely has peace. We found sleep is the only thing that has helped her. So we use a pain rx spray(due to the vomiting) It helps she says 25%-35%. Also try the bc pills that are for 3 months( no period) she swears by that, she still suffers, but says its only 4 times a yr. Periods always make things really bad. The next big thing to help her; when she can, hang out with kids her age. College was a no go, due to the vomit and migraines. Though under the ADA they could help some, she just missed to much time and school work. Like most things in her life( volunteering, friends, sports, etc) she felt it as another big failure. She has SSA disability(her Dad passed away)now and lives in her own home, with several pets as company. You will have to fight for everything. Hopefully you can find someone in her area that also suffers from migraines. Its a long, long road, often left to suffer alone cuz people get tired of the, sorry I'm sick. It's hard because so many people say they have migraines and they don't have the problems your daughter has and will never understand. I only hope in the years to come, there will finally be something to help these types of children. My daughter handles them better now she's older I walked in your shoes, stay close to her, help her fight those battles she will face, because its a Mom's love and devotion that will help her fight those demon migraines. I wish you & your daughter luck.
jw219 Member
Hi- I felt like I needed to register on this website and comment for the first time because I too have suffered from intense chronic migraines since I was a young teenager. I am 26 now and after 12 years of suffering on a nearly daily basis, I finally have my life back. I knew I had a serious problem with my migraines when I would wake up feeling good, with no pain, and it would be a strange sensation. I tried EVERYTHING and saw doctors in New York, New Jersey, Boston, and southern California. I saw highly reputable neurologists, TMJ specialists, a world-renowned headache and facial pain specialist and even chiropractors and even tried various types of eastern medicine (i.e. acupuncture, herbalist, vibrating muscle stimulation)....NOTHING worked. It got to the point where I was on literally 4 different daily medications + 4 different supplements, and then I was taking a pill at the onset of my migraines (which was basically every day). I was also regularly in the ER (the only thing that quickly knocked out the pain was getting hooked up to an IV for a few hours and laying in the dark hospital room). I have tried all of the "new study" medicines out there as recommended by my many neurologists and got multiple MRIs, blood work done, x-rays on my head and face, a mouth guard when they thought it was because of TMJ etc. etc. I graduated college and landed a great first job in the field that I wanted to be in and almost lost it because I had to miss so much work due to my debilitating migraines, or the fact that I couldn't get up out of bed because of all the medication I was on. The only thing that saved me was the long paper trail from numerous doctors showing that my condition was real. When I got a migraine it would start at the nape of my neck and travel up the side of my head behind my ear and end right at the top of my head. It was the same pattern every single time. No aura, but I would be extremely sensitive to smells in particular and also to light. I would get numbness in my hands (several times while driving - terrifying!) and vomit from the pain. I kept a pillow in the backseat of my car so I could get away from all light and sound and smells and try and will the migraine away during my lunch hours. The only place that felt OK was the shower with the light off and the hot water running over my head. I would lay in the shower like this and sometimes even fall asleep in there because the pain would keep me from sleeping. My life revolved around my migraines. I even put off law school out of fear that I wouldn't be able to get through it due to the high stress it involved. I was so frustrated, and so was my family. We all felt helpless and very alone because no one seemed to know how to help. I am telling you all of this because I want you and your daughter to know that there is hope! I (knock on wood) have been almost totally migraine-free for about a year now. But I did it my way - I stopped taking all of the medications I was given, and I decided to take a more natural route. So, after reading that physical activity helps with migraine prevention, and considering the fact that I never really exercised at all, I got a personal trainer and started seeing her 3 times a week for a half hour. We specifically focused on building my upper body strength through light-weight strength training. For the first 3 months I was still getting migraines, but I would force myself to go to my training sessions and I always found that I felt a bit better afterwards. At the same time, I also saw an allergist and found out I had an allergy to soy. So my next step was to start going through my diet and taking out everything that contained soy (which is in a lot of food these days and we don't even realize it). I also tried to see if I had any other triggers by taking out certain foods that were regular fixtures in my diet for 2 weeks at a time. I wasn't seeing much of a difference - still in pain every day - until I cut out meat. This was really hard for me because meat was a daily staple in my diet. But, I stuck with it because I really was feeling better. It was a noticeable difference and I don't know for sure, but the huge difference I feel now that I don't eat meat makes me believe that it was my main trigger. I do still eat fish and am fine with that. I then was prescribed Maxalt by a neurologist, which I started taking at the onset of a migraine, with (on his recommendation) 2 extra strength Advil. I also committed myself to staying on a strict sleep schedule - no less than 7 hours a night, and I made sure to stay hydrated (I know... I always hate when I'm in the midst of a migraine and people say "oh, drink some more water!" But coupled with everything else it has helped), and to eat small snacks constantly throughout the day. The last thing I do is try to meditate for a few minutes every day. This has been my routine for over a year now and I am SO happy and relieved to say that for the most part, my migraines have left me alone for about a year now. When I do get one now (which is rare, and none that have caused me to get sick and miss out on life), I take a Maxalt and 2 Advil, take a hot shower, put a heating pad on my neck, and I am good to go within the hour. I just told someone the other day that I feel like I've gotten my life back. I am now in law school and even with all of that constant stress I am still OK. I guess to sum it all up... I was hopeless and frustrated and felt like nothing would ever help me. I felt completely alone and scared for my future - I questioned whether I'd ever be able to live a normal life - have kids, maintain a job, travel, have FUN. I was desperate... but I kept pushing and pushing and finally found the ingredients that work for me. I hope this helps you and your daughter in some way. Maybe she can try some of the things that have helped me, or at the very least, I hope my story shows her that there is hope, and the answer is to never give into the dark migraine monster that can literally takeover and ruin your life... keep fighting back and trying new options. Don't settle for what your doctors say, and stay positive, no matter how hard and scary and lonely it may be. GOOD LUCK! XO
award00 Member
I, too, felt like I needed to register just to comment on this thread because I can so relate to your frustration. Neither my husband nor I ever had migraines although they do run in our family. My daughter, who is 13, got her first migraine on August 29. It responded to an OTC med but came back after 3 days, was admitted to the ER and was good for 7 days, another admit and was good for 36 hours -- after that her migraine would not responded to any abortive meds. We finally went to see a neurologist who is a migraine specialist (best decision we made!) and he put her on Topamax. It took a while to kick in but on October 21, the migraine finally subsided. Since then, she's had 3 more migraines, which were increasing in severity and length. The most recent migraine was bad and lasted 6 days. Now he is weaning her off Topamax and she will be starting Depakote. We were lucky in that her school has a pilot online school program this year. We still struggle with that and have been fussed at several times about being behind. That stress does not help her. Her doctor believes its stress and hormones. I would do anything at this point to help her and am considering putting her on birth control pills, if the Depakote doesn't work. I'm also concerned about the Depakote side effects. I'm hoping they are better than the Topamax. Topamax definitely makes her memory VERY foggy, which is a challenge for school. I so feel your pain as I would rather it be me than my child.
award00 Member
I forgot to mention that acupuncture REALLY seems to help. During the extended migraine, I found that while acupuncture would not take the migraine away, it seemed to help lengthen the amount of time that DHE worked to lessen the pain. For the last 2 out of 3 migraines, she would take Amerge and then have acupuncture and the migraine would go away within 24 hours. This last migraine was bad and the same protocol did not work. She had 3 acupuncture treatments and switched to Imitrex and it finally worked.
miss76 Member
I am 37 and have migraines ever since I was little. Most of my migraines would last several days. Most of my headaches fall under 3 categories. 1. Sinus headaches. 2. Aura migraines. 3. Migraines due to muscles being out. For my sinus headaches if I take 1 Benadryl and it usually goes away. The aura migraines have started within the past 10 years. They almost always seem to occur when I have been outside and the sun is shining brightly. Things seem extremely bright and my peripheral vision is slightly blurry. If I take Advil/ibuprofen as soon as this happens the migraine will almost always stop, but if I don't get otc medicine within the first half hour, I will be throwing up in the bathroom for hours. My final migraine is almost always due to muscles being out. I discovered this about four years ago. I was taking a shower soaking in the hot water due to particular migraine that had been going on about 5 days, I was throwing up constantly within those days and I was miserable. While I was soaping up I hit a intensely sore muscle along my rib cage. I rubbed this muscle out and almost cried when I did because it hurt so badly. After my shower, I went and took a nap for about an hour. When I woke up my migraine of 5 days was gone. This was my turning point. Every time I am in the shower I search for sore muscles. To find them I have to rub very hard and often use my soapy knuckles to dig in, if I rub lightly I will not feel them. It seems odd, but most of the time I cant even tell I have a sore muscle. Most of my sore muscles are in my legs, sides of the hip area or lower back. When I was younger if I had a migraine I would go to bed and often my migraine would just go away, but that does not happen anymore. I have to take Advil/ibuprofen and rub my muscles out to get it to go away. This is also true for my teenage nephew. He has migraines and is unable to take ibuprofen. One day he had a bad migraine and I persuaded him to let me see if I could find any sore muscles. He let me rub his back but I could not find any sore spots. His hips were pretty sore, but I happen to find a knot on his calf muscle. He was yelling/crying at me the whole time I rubbed his calf muscle out about how much it was hurting him and took about an additional 20 minutes to rub out his sore calf. About 2 hours after his massage, his migraine of several days was gone. I personally can't afford a professional massage or acupuncture, which I think would greatly help, but I am fortunate that I can treat most of my migraines myself and that I have learned to do so. I take a magnesium supplement and drink green smoothies now, which I believe that slightly help. I also have some food triggers as well, sometimes it seems like chocolate and cream cheese start a headache as well. Stress triggers them too. My headaches that start around my menstrual cycle are almost always due to my muscles. It first always feels like my neck needs to crack. I hope your daughter if able to find out her migraine triggers. I went through a lot of testing when I was young and gave up because nothing helped. I went from throwing up weekly to only a few times a year.
1. miss76 Member
 I forgot a few things. I also do pilates that is more stretching and breathing along with regular exercise. Too much exercise throws my muscles out badly. I also DO NOT use an electric massager if I already have a migraine, that makes it much worse, but I can use one if I do not have a headache. Your daughter has to eat to feel better as well. My body is happier with several small meals a day 200-300 calories per meal, I think it keeps my blood sugar more steady. Kefir (yogurt) helps to settle my stomach...sometimes.
mrsgunnyt Member
Dawnwtwins, reading your story is like reading an account of what happened to my teenage daughter. Her migraine started in July 2010 at age 14. We tried everything you listed, and more. Her pain was 24/7 and nothing worked - not even inpatient treatment at the Diamond Headache Clinic. After 1.5 years of pain, when she couldn't even attend school any more, we heard about nerve decompression surgery. She had two surgeries in 2012 and now is a regular teen. She takes no prescription meds. She even played varsity soccer this year! Surgery is a last resort, and there are no guarantees, but it was a miracle for us.
mom7 Member
I hope this will give you some hope. My son was 15 when he began suffering migraines. The doctors first thought it was "just headaches" because he did not see an aura. At different times he was even given Lortab because the pain was so bad. Finally, after 2 years and after the migraine intensity increased to the point he had missed almost three weeks of school, and slept almost the entire three weeks, I insisted there had to be something more to be done and he was referred to a neurologist. The neurologist gave him Topamax and had him take an Imitrex that night It helped him but did not "break" the headache. Two days later I called the neurologist back. My son was thankfully then hospitalized and given an IV medication (I don't recall the exact medication but it was simple initials - D????) A nurse had to stay with him while it was given and it caused what he called a feeling like he had awaken from a horrible nightmare. Then within minutes he went to sleep. When he woke up the headache had eased. He was given another dose which almost completely eliminated the headache. Then he continued the Topamax which lessened the frequency and severity of the headaches but did not stop them. But the Topamax caused such "brain fog" that he began to hate school and suffer emotionally. Finally, the neurologist agreed to switch him to Amitryptiline which also helped but did not stop the headaches. A year after first seeing his family neurologist, he was seen at Cleveland Clinic by Dr. Jinny Tevee(sp?) She was our miracle. She recognized the connection between a motorcycle accident he had had at 14 and the migraines and the understanding she showed my son was such a blessing. She started my son on Zonisamide - a very old migraine medication. He has not suffered a severe migraine since. His family neurologist did not believe it would help but it did. Then 10 months ago he began suffering abdominal migraines. His family doctor incorrectly diagnosed panic attacks because the vomiting was accompanied by sweats and a rapid heartrate. Thankfully his neurologist shortly recognized that it was abdominal migraines and upped his zonisamide and the abdominal migraines went away. It has been 18 months now since he found the right medication and the difference is amazing. He has not had what he calls a "real migraine" in all this time. My heart goes out to you as a mom. It killed me to see my son suffer like he did until the right medication was found. Don't give up. I encourage you to talk to a neurologist about other options to "break" the migraine and ask your daughter about any fogginess on the Topamax and make sure this is not going on with her. It is a very common side affect and is very emotionally troubling for a child. If you get no relief for your daughter with your family physicians - see a specialist at a larger hospital. Don't be afraid to push for more options. Prayers for you and your family.
not found
I have a 14 yr old daughter who has New day persistent daily headache with migrainous and visual snow. We keep a daily headache log and she is in constant pain of a 7-9 everyday. We have tried asprin, naproxen, imitex, propranol, nortriptyline, topamax, homeopathy, magnesium, b-2, tylenol, caffeine,detoxifying and many supplements. We have seen several doctors, including doctors at UCSF. We were told that this type of headache usally lasts 3-5 years.
dawnwtwins Member
The good news is we are making some good progress. We got her into the Hartford Headache Center and an amazing Dr. who specializes in headaches. She could see immediately that Kaity had multiple issues causing her headaches, triggering episodes and making them happen more frequently. The Dr. placed her on amitriptyline with her Topomax and gave her a new Triptan than works a little more over time and doesn't give her the kicked in the chest by a horse feeling for when she gets a horrible headache. In addition to that stuff, we have found a new therapist she loves and is completely opening up to. Turns out that there are some major issues (caused by the school's attempt to force her to school) making this all much worse. She is trying to work through those and the anxiety and depression that go hand in hand with these migraine episodes. She's also going for physical therapy on her neck and upper back as it turns out she has major muscle spasms and posture issues that could be causing some of the headaches (and she wouldn't tolerate massage or acupunture) She is being tutored at home now and we are not forcing her to school and not fighting her every day is making the headaches less frequent. They are still there of course but fewer stressors are always better. Now to find a tutor who can actually teach her Algebra 2. The first one could not and needed to be replaced. Nothings easy is it?!? LOL As I've said before and will likely say again though - the support we have found here has been so amazing and has given me the strength and information I needed to keep pushing for the answers we need for Kaity. Thank you.
1. Katie M. Golden Moderator
 Thanks so much for the update! Sounds like Kaity's condition is improving. An entire family suffers when one person deals with chronic pain. It's amazing how your family has adjusted to make her life better. You should be a proud mom! For Kaity, this has got to be difficult. I'm sure she has good and bad days, longing to be with her friends. I recently came across a high schooler with Chronic Migraines. As her senior project, she is committing to increase awareness of this disease. I thought that Kaity might be interested to connect with someone her age fighting the same battle. On Facebook, search "Chronic Migraine Senior Project." It's amazing how resilient kids are. Good luck to Kaity and your whole family! Please keep the updates coming! -Katie

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